Miles

Miles

Miles make a salad with play money in his 3-year-old classroom. He celebrated his 4th birthday in June.

Recipe for Success | Summer 2013 Spotlight |

Three-year-old Miles Johnston is  working in the play kitchen, mixing a  bowl of plastic coins with a spoon before  placing the dish into an oven. His parents  have shown up unexpectedly in his  Jordan Center classroom, but Miles stays  on task. He’s got a dish to prepare. He  closes the oven door, twists a red dial to  set his baking time, and then turns  around to beam a delighted smile at  Abby and Scott Johnston.Miles is in his element. He loves to  cook. He imagines the food in his hands, pretending to chop, spread and mix with a precision he learned watching celebrity chef Ina Garten, host of Food Network’s Barefoot Contessa. It’s one of his favorite shows.

It’s ironic, this fascination with  food, because Miles has struggled with  eating for years.

Since he was born, Miles has battled with a digestive system that rejects the food he swallows and even the liquid nourishment that pumps through a tube directly into his stomach and small intestine.

A towheaded, 30-pound slip of pure energy, he is one of 10 children with developmental delays who are enrolled in the Jordan Center through the Frankie Lemmon School in Raleigh. The partnership capitalizes on the Jordan Center’s skilled teaching staff and inclusive classrooms, which combine typically and atypically developing children. Class sizes are capped at 12 children, and therapists come in for speech, occupational and physical therapy.

Fitting In
Miles came to the Jordan Center’s Starfish classroom in December with delays related to his problems with digestion and nutrition. Eating hurts, and his food won’t stay down. A gastrojejunostomy (GJ) tube surgically inserted in his abdomen delivers liquid nutrition as he sleeps, but for years it’s left him sick and irritable, especially in the morning. At his worse, he’d wake five or six times a night, crying in pain and vomiting. “He’d wake up in tears. He’d wake up screaming crying, and then throw up,” Abby says. “That was how he greeted the day each day.”

In the year between his first and second birthdays, Scott says, Miles didn’t gain an ounce of weight, and he’s still recovering. He’s small for his age, and he’s got only a few words in his spoken vocabulary. He communicates mostly with expressions and gestures.

But he’s also a typical preschooler—playful, silly, spirited and even a little strong-willed, like his favorite fictional character, Curious George.

This is the child his Jordan Center friends see. This is the Miles they know. To them, it’s not a big deal that he has a GJ tube. It wasn’t a big deal that he trudged around all day with a backpack full of formula for his GJ tube when he arrived last year. Nor was it a big deal when he got to stop wearing the backpack in January.

The Jordan Center was founded in 2001 with inclusiveness at the heart of its mission. This made it an appealing partner for the Frankie Lemmon School, which serves children referred by the Wake County Public School System for delays of various kinds. At the Jordan Center, children with disabilities are placed into classrooms with typically developing children, and they tend to rise to the higher challenges of play and learning. The typical children, in turn, benefit from early exposure to diversity and lessons in acceptance, says Jordan Center Director Katherine Hutchens.

Miles and Angela

Miles and his Jordan Center teacher, Angela Romatzick

“They’re at an age when they’re very accepting of differences and open to understanding that everybody is not the same,” Hutchens says.

Lead teacher Angela Romatzick says she took a low-key approach to preparing the class for Miles’ arrival, explaining that he was younger and needed to learn about his new school. The kids all went into helping mode. When they realized he had issues with eating and speaking, they became his cheerleaders.

“It’s taught them a lot. They’ve never been unkind to him,” Romatzick says. “He’s so positive. He never has a bad day. He’s never in a bad mood. He doesn’t get upset. The other kids really respond to that.”

Breaking Through
For nearly four years, Scott and Abby have juggled doctors’ appointments, worked full-time jobs and stretched themselves to parent Miles and his older brother Henry, 8. They’ve fought sleep deprivation, frustration and fear as they’ve searched for treatments and therapies that would help. It’s been a wild ride, with rollercoaster ups and downs, as doctors have tried one medicine after another, looking for some combination that would relieve Miles’ symptoms.

Nothing has worked until recently. It’s early still, but Miles’ parents are holding their breath as a new medicine used to treat seizures seems to help dampen his body’s reaction to food. It’s changed everything in a matter of weeks. “He hasn’t thrown up, he’s eating twice the amount, he’s slept through the night and he’s waking up happy,” Abby says. “And that hasn’t happened for years.”

If this continues, Scott says, the other parts of Miles’ development can start to fall into place. “The first thing he has to do is eat,” he says. “He has to keep it in. Everything—his speech, his physical development—is based on nutrition.”

Miles gets physical therapy and speech therapy at the Jordan Center through the Frankie Lemmon School. His therapists and Romatzick are a team with his parents, each sharing observations and ideas to help him get stronger. They created a “speech club” with his classmates to encourage him to speak new sounds. Letter combinations are printed on a card he wears around his neck. He mastered –op, –ap and –up in a week. They set up a Friday cooking class, making treats like quesadillas, warm pretzels or fruit smoothies that inspire him to eat. “If Miles makes it with his friends, Miles will eat it,” Romatzick says.

Already Miles’ learning is accelerating, Romatzick says, and he’s emerging as a peer rather than a younger sibling-type who needs help. He’s made more attempts at words in the past four months, and he can say the names of his friends. Of course, he can also say “salt and peppa” and “bubba” for butter.

Scott and Abby are waiting for the day when the words come freely and they can have a conversation with Miles. “I know there’s so much more that we’re missing,” Abby says. “I have a nephew who’s a little younger than Miles, and I talked to him on the phone the other day. We were having a full-blown conversation, and I’m realizing I can’t do that with Miles. But I’m hopeful that I will sooner than later.”

When Abby and Scott were picking names for their newborn almost four years ago, unaware of the struggles that lay ahead, they considered a couple of possibilities. They settled on Miles, meaning soldier or warrior.

“I think that’s ironic,” Abby says. “He has been such a gift. When you have children, they say, they make you not selfish. Miles has been such a challenge, yet I wouldn’t want any other child. I used to ask, ‘Why? This isn’t fair.’ But when Miles laughs and when he’s happy, our whole family is happy.”